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In France - Cécile

 

Cecile site1.JPG

 

 

 

Cécile is 33 years old.

She lives in Alpes-Maritimes, south east of France.

She was diagnosed with 22q13 deletion when she was 26.

 

Her mom talks about her :

 

"She was a beautiful baby. No hypotonia problems, no physqical problems. A really pretty girl. 

She had many ear infections then sleeping troubles. She woke up several times a night until I allowed her to sleep with me...

 

She sait "dad" and "mum" when she was around ten months old and then it was incomprehensible words and angers when she was not able to be understood.

I divorced when she was two and half years.

I saw many doctors who didn't think all Cécile's difficulties were not really important.

Then I saw psychiatrists who did nothing but only blamed med (divorce, "symbiotic" relation...).


Cécile went to a day nursery until she was three. Then to nursery school until she was six.

 

During the same time, she had a therapy (she drew while a succession of psychiatrists asked me to talk about my life. The result was her problem was not solved and I was considerably destabilized).


Many times I asked her to have exams. She spent sometimes one week in hospital. She had the first scanners, audiograms, even healers.. I din't know what to do. 


Little by little with the speech therapy, she began to talk a bit.

She is actually able to pronounce all the phonems but for some words she can't say the consonants. She has her own language but she understand everything and she always try to make her understand.


Cécile was never called an autist because she always wanted to commmunicate. 

 


She went to an educational institute until she was 16 then to a professional institute until 20. 
She did about five internships in a "help threw working structure" but the idea to stay here was finally abandoned.

In november 1997, when she was 23, Cécile had a failure of mental balance (decompensation). It was the beginning of many years of suffering.

She was hospitalized in psychiatry, first in Paris, then in the south where we live since nearly ten years. I had to fight against psychiatrists who druged her. She took 15 kilos.


When she began to be better, she had nowhere to go despite all my registration requests in all the structures of our region.


In march 2000, she went to a structure named "foyer de vie" (where she stayed all week long) until she had again a failure of mental balance. She came back to hospital, she loose her place in the structure.

Actually, (since november 2003) she is in a MAS ( specialized home structure).

 

It was the same in 2001. So I demanded to have a genetic test and I knew the diagnose.


 

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If you want to get in touch with Cécile's mother, please send me a mail and I  will let you be in contact with her.

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Creation date : 27/03/2008 · 09:20
Last update : 28/02/2011 · 17:46
Category : In France
Page read 7048 times


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22q13 deletion - Phelan-McDermid syndrome
To inquire Getting informations Medical research
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To consult

= Elever un enfant porteur de la délétion 22q13 (en anglais)

= Elever un enfant porteur de la délétion 22q13 (traduction française)

= Sites d'apprentissage de la propreté (en anglais)

= Relation entre gêne Prosap 2 et délétion 22q13 (en anglais)

= Relation entre gêne Prosap 2 et délétion 22q13 (en français)

= Relation entre gêne Shank 3 et autisme - Institut Pasteur- (en français)

= Etude sur 33 patients : relation entre la taille de la délétion et le développement/comportement (Me Mattéi) (en français)

= La douleur sur internet (en français)

= Vivre avec une maladie rare en France - Guide Orphanet (en français)

= Guide Unapéi - Vivre avec un enfant différent -

= Plaquette UNIQUE sur la délétion 22q13 (en français)

= Article "genetics in medecine" sur la relation entre autisme et anomalies génétiques (en français)


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